By Ebunoluwa Sessou

The need to give special attention, create vocational opportunities, and show more affection and understanding as well as public acceptability of autistic children was the centre of discussion at the maiden edition of the Autism Awareness Campaign organised by Farida Seth and Stefan, FSS, Foundation.

Children on the spectrum or autistic children display pervasive developmental disorder (PDD), pervasive developmental disorder-not otherwise specified (PDD-NOS), Asperger syndrome, as well as high functioning autism.

Children on the spectrum exhibit different behavioral patterns. Classic autism, or autistic disorder, is the most severe of the autism spectrum disorders.

For parents’ warriors living with children with spectrum, the narrative could be interesting, intriguing and even more challenging. To determine whether or not a child has come down with autism or a related autism spectrum disorder, or another developmental condition, it is important to look carefully at the way your child socializes, communicates, and behaves.

Diagnosis is based on the patterns of behavior that are revealed during evaluation. The team of specialists involved in diagnosing your child may include child psychologists, child psychiatrists, speech pathologists, developmental pediatricians, pediatric neurologists, audiologists, physical therapists and special education teachers

Determining where your child falls “on the spectrum” is not a brief process. There is no single medical test that can diagnose it definitively; instead, in order to accurately pinpoint your child’s problem, multiple evaluations and tests are necessary.

Sharing her experience, Mrs Opeyemi Ebagua, a former banker and mother of Justin Ebagua, a 17 years old young man who has been under the spectrum of autism, told Vanguard that the journey of taking care of an autistic child has been challenging emotionally, financially, socially, and otherwise.

Ebagua also said, the journey has been unique in its own self. You see different tantrums, meltdowns and the aspect of not being verbal, diet among others.

“You know, different things, diets. You know, getting sickly, different things, and we thank God for where we are. Unfortunately, there is no support from our government. We don’t have anything from our government.

“Therapy is too expensive. Most parents cannot afford it. We have therapy that goes as high as N200,000.00 every month, and that is just maybe for speech therapy. And we have different kinds of therapy, occupational therapy among others. So we are calling on our government in Nigeria to support the special needs.

“We are calling on the government to help us and we are not going to rely on the government, on teachers, we are the first therapists.

“You need six specialists to diagnose an autistic child in order to ascertain the situation. I started the journey with my child when he was 20months and today, he is seventeen years old.

“I took him to different schools. Some schools rejected while others accepted because of the meltdowns, tantrums, they are biting stages.

“The awareness is not there and that is why most people believe that children on the spectrum are mad. School owners call you to take your child whenever he is displaying some tantrums.

“There are times; you had to leave your work because you needed to attend to your child. I went through this while he was growing up. He is 17 years old now.

“Spectrum children are unique, they are special needs and they do not need to be doctors, lawyers or otherwise, and that is why we are advocating for vocational skills and training for them. Right now, the government should focus on establishing vocational schools that could help these children on how to do so many things including painting, baking, shoe making, carpentry, and farming among others.

“As parents, we will not be with them forever, therefore, they need to be independent and cater for themselves. We expect them to get married and have children and be responsible”, she said.

Another parent, Mr. Adedapo Kukoyi who has a-7-year old spectrum child, advised parents to always accept that spectrum children are special children but not different from other children.

According to him, “It is important to educate ourselves as parents before educating people around us. We should start from our homes, siblings, cousins, nephews, nieces, uncles, aunties, grandmas and grandpas among others. They need to accept and love the spectrum of children. There is a need for a continuous support system to be put in place.

“The love will extend to the society, housekeepers, schools, as well as the healthcare givers.

“Spectrum children do not need to be separated from society. I take my son out and make him feel loved and have a sense of belonging and associate with people. That he is a little bit different from other children does not mean that he is not worthy of love. So we explain that to everyone and make sure that he should not be treated differently”, he said.

The founder of Farida Seth Stefan Charity Foundation, FSS, Brook Eduok speaking on the challenges faced by autistic children said, the acceptance by the society is still very low.

According to her, “We have lots of parents that have refused to accept these children. They still look at them like a cause or a problem, and we are appealing to these parents to come out of it. The earlier they do interventions for these children, the better for them

“This foundation is to help bridge the gap in lack of awareness information concerning kids with disability and special needs, especially those on the autism spectrum disorder. There’s a lot of misconception, and this causes a lot of discrimination, stigmatization in our society today.

“Autism is not a short term disorder, it’s a lifetime disorder. The earlier parents accept the children with their special needs the better. We need to give them the proper structure, care and therapy, it will help them become self-sufficient in life, and be able to thrive.

“As much as it is not easy to be a parent of a special child. It is a 24/7 job. And that is what FSS is all about, trying to empower parents that cannot afford therapy, proper structure, and tools.

“The organization was created to help many homes that need help and we are trying to do our bits to make people living on the spectrum have a better chance in life.

“Our appeal to the government, organizations and others is that we need funds and resources. The resources are so limited unless the government intervenes. The financial inducement from care giving to therapy sessions is alarming.

“Some parents cannot even afford the cost of a therapy session. There is a need to help parents a lot. We want the government to do more, there is a need for inclusivity. There should be laws and policies in place to provide an enabling environment for autistic children, there should be special job opportunities for them.

“Schools should not only be inclusive but be able to engage teachers and caregivers who are passionate about the need of special children in the classroom.

“As an organization, we will continue to create awareness, organise outreaches to sensitise people on spectrum children”, she said.